While waging the war on our body we are pushed even further by the medical field. In an attempt to get a diagnosis and proper treatment we can be forced to jump through unnecessary hoops. Here are some things Ankylosing Spondylitis patients are told while hunting for help;
-“it’s in your head”
-“you are too young to hurt all the time”
-“you can’t be that sick”
-“you’re just fat”
-“you just need to get back to school/work and stop being so lazy”
The list could go on for miles! Two that the medical field kept repeating to me were “you are a female and this is a man’s disease” and “you don’t have the gene marker so that is not possible”. Boy some days I wished I would have let these people know just how rude and WRONG those phrases are!
I know most of you have been there and understand that aggravation that is lit with-in when you go into your doctor for help only to be told “well that is odd I don’t know why you would be having that” ….. um Really? I could have said that and I didn’t spend years in school. Not one ER or medical professional outside of two Rheumatologists I’ve seen have had any idea what Ankylosing Spondylitis is.
This is a full systemic disease (meaning it affects the entire body) that is nowhere near rare, people need to know! We need to be treated with care by knowledgeable professionals. I couldn’t even list all the times I’ve been told by a medical professional to do something that would negatively impact my health due to Ankylosing Spondylitis or the medications that treat it. Since they don’t know they are not doing it intentionally but if I wouldn’t have known where would I be right now? The last time I talked to my pharmacist about medication interactions I was told, I’m on too many and it’s too risky. Great!
It’s dangerous to seek medical help when no one can knowledgeably treat you. I don’t mean to bash on the medial field and would like to express my respect to them, as I do work in it as well, but you all know how seriously lacking it is for Spondy’s.
We can change this! It would not be hard for the medical groups to start becoming educated about this but we must do our part to make them aware how desperately it’s needed. Speak up and remember you are your own best advocate!
I hope the medical field begins to respect our illness enough to educate themselves about this monster. Ankylosing Spondylitis is nothing to be taken lightly and we desperately need to feel confident in the team treating us. I get more support and knowledge from my fellow Spondy’s at this point than any physician. I don’t think it’s too much to ask to have them at least learn the name and what it affects primarily, do you? Having to be your own advocate at every turn becomes exhausting!
Let’s stand tall together and be heard!
If you get nothing else from this post but this one thing I’ll be tickled pink! Go read this Letter to the Chronically Ill that was written by a Doctor. It’s amazing!
Here are some links to help you be your own advocate;
Drug interaction checker (thanks Cookie)- don’t plan your treatment on this but be aware of it.
SAA is trying to educate doctors they are my go to source for all things Spondylitis and one of the best non-profit groups working everyday to help us!